Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

At a lonely clearing in a wood, a group of blind people await the return
of a priest who led them there in order to enable them to enjoy the
last rays of the sun before the beginning of winter. Only the sound of
the nearby sea can be heard. The longer they wait, the more restless the
blind people become; in their desperation they realise that they are
helpless and cannot move from their place. Their fear escalates to naked
terror when they discover the corpse of the priest. The blind people
form a circle round the dead man and begin to pray for forgiveness and
salvation. Steps become perceptible during the prayer. The presence of
something mysterious makes the blind people panic; they pray ever more
fervently. In his mother’s arms, the small child, the only person in the
group who can see, breaks out sobbing. What does the child see? Is it
rescue, the rescue so ardently hoped for, or is it death?
This opera will be performed at Lincoln Center in June. It has already been performed in Moscow and Berlin. Auerbach is a major player in the music world. Apparently Auerbach read Maurice Maeterlinck 1890 one act play the Blind and believed it would make a great opera. As I understand Maeterlinck, he thought blindness was a metaphor for the human condition. That is life often leads us astray and powerful forces beyond our control dictate our lives. I am by no means a literary analyst but I do get that Maeterlinck was not writing about people who were blind but rather those who are disempowered. Symbolism I get. What I do not get is how Auerbach could have written the above words. It is 2013 not 1890. The play by Maeterlinck was important circa 1890 but is highly objectionable today. Let me correct myself: the words above are not objectionable they are offensive in the extreme. It is ableism run amuck.

What was Auerback thinking? In her words: “I love Maeterlinck. When I read ‘The Blind’ I thought to myself - this
story is a perfect opera. Or anti-opera. And it needs to be done
a-cappella. Since some of the characters are continuously praying or
chanting - this provides a perfect structure for a chamber-music
approach to balancing of the voices where some of the voices provide a
constant harmonic base, while the others play more prominent voices.”

This is intellectual masturbation. The play rests upon the premise that the blind characters are utterly and completely helpless, dependent upon others. By extension blind people today are dependent retches. My friend Stephen Kuusisto wrote the following email when he learned the Blind would be performed at Lincoln Center.The description of the opera on Lera Auerbach's website left me
speechless, inasmuch as it employs nearly every conceivable "ableist"
cliche about blindness one can employ--blindness is embedded in her
précis with more cliches than any one person may creditably imagine. In
fact the synopsis is so offensive I'm left with a dislocated mandible
which I hope is a temporary condition as I'm at the MacDowell Colony for
the Arts and there are no local dentists. How could Ms. Auerbach
imagine that in 2013 blindness can still be used as a metaphor for lack
of knowing or knowledgeability; powerlessness, spiritual failure,
immobility, or worse, stand as a metonymic reduction for death itself?
The description from her web site would, in fact, cause me to cry save
that her prose is so louche and decadent one finally has to conclude
this is a joke. Will Lincoln Center actually print this in the
programs?

Lincoln Center will surely print Auerbach's bigoted note. Auerbach's opera will be fawned over (see Auerbach's website or Facebook page). However people like me who mix disability studies scholarship and activism are offended. Auerbach's words are so horrific I refuse to engage her or Lincoln Center. I very rarely refuse to engage the normate to use Garland-Thomsen's awkward word. Sometimes one must simply say no. The words are too wrong or the ideas too horrible to contemplate much less discuss. To engage is to provide legitimacy to the other. Therefore I refuse to debate Auerbach or a scholar such as Peter Singer. They have not earned my respect.

One final point: my experience with Lincoln Center has been consistently terrible. Lincoln Center, even after major renovations, is not particularly accessible. It has been and remains a hostile social and physical environment for people with disabilities to navigate. Lincoln Center is far from unique. Many such comparable institutions perceive disability with disdain. We do not want those pesky people who use wheelchairs in our lovely buildings. And guide dogs? No way. This is not the image Lincoln Center wants to cultivate. The closest I will come to the Blind is in a protest outside of Lincoln Center.

Sunday, February 24, 2013

Disability rights and civil rights are considered to be different. There is significant resistance when I equate disability rights with civil rights. The reaction to linking disability rights and civil rights is often emphatic--emphatically negative. In large part the reason why people do not consider disability rights a civil rights issue is that they have no exposure to people with a disability and the social model of disability. Disability for the public at large remains a physical problem--the impairment model of disability reigns supreme. Blind people advocate for themselves. Deaf people too. I am a member of the chrome police and selfishly advocate for wheelchair access. By logical extension the main problem a paralyzed man such as myself has is the fact I cannot walk. Nothing could be further from the truth. The least of my problems is the inability to walk. The major impediment I encounter is the social stigma associated with disability. My presence, indeed my existence, is not valued. Given this, the majority of people will balk when so called "reasonable accommodations" are required by law. Without a social mandate for inclusion the last 40 years of legislative initiatives designed to empower people with a disability will continue fail. For example, the ADA and inclusion of children with disabilities in schools will be considered an onerous burden forced upon local authorities by the federal government. Inclusion and access is not about civil rights but a needless economic burden imposed on schools. A perfect example of this line of thought was the recent U.S. Department of Education letter that stated extracurricular athletics are an important part of education and that schools must provide comparable athletic opportunities to students with disabilities. The letter was designed to help schools understand what their legal obligations were. When I read the letter signed by Seth M. Galanter Acting Assistant Secretary for Civil Rights I was convinced of one thing: it would be met with howls of protest and be ignored by the vast majority of schools.

The negative reaction to the U.S. Department of Justice letter was expected. In my experience, when disability issues come up at secondary schools and universities the reaction is rarely if ever positive. I cannot think of a single instance when I was at a meeting and there was universal support for a disability related issue. I have also learned not to make comparisons between disability rights and other minority civil rights--especially when it concerns race. This sort of comparison prompts a knee jerk response. "Utter bullshit" is said with force. Rolling of the eyes or walking out of the room are typical responses as well. What this response conveniently ignores is basic facts. For instance, the aforementioned letter was written by the U.S. Department of Education Office for Civil Rights. It was signed by Seth Galanter, Acting Assistant Secretary for Civil Rights. The Federal Government considers disability rights to be a civil rights issue. Let me state that sentence again: the Federal government considers disability rights to be a civil rights issues.

I find it hard to fathom why twenty plus years after the ADA was passed into law disability based bigotry abounds. Disability based bigotry has been on the forefront of my mind because I made the mistake of reading the comments to Jemele Hill's commentary on ESPN about Oscar Pistorius (she quoted me in her column). See link: http://espn.go.com/olympics/trackandfield/story/_/id/8971736/olympic-myth
Hill is a controversial figure at ESPN. A native of Detroit, Hill was hired by ESPN in 2006 as a national columnist. Prior to speaking with Hill I read a few of her columns and would venture to guess she was hired because she is a well qualified, well educated and articulate black woman who is not afraid to voice her opinion. I felt she would be receptive to a disability rights perspective and I was correct. I expected a strong reaction to her column. However the vitriol directed at her and by extension disability rights was a shock. I ignored about 80% of the nearly two-hundred comments about her column. The remaining 20% fit into two groups--race based bigotry and the refusal to reject Oscar Pistorius was inspiring (an example of inspiration porn." Here is a random sampling:

On inspiration:

If Pistorius had overcome his disability and become a
garbage man it would have been an inspirational story.

Pistorius was not overhyped. There is no hype in the
universe that would suffice the story of man with no legs competing in a sprint
in the Olympics

You watched the performances and formed no opinion about
courage, determination, and drive required to overcome his handicap?
Nonsense.

Does Jemele really want to down play what Pistorius achieved
& done to become a successful athlete (& yes also overcome his
disability)?

On race:

Unbelievably she did choose a quote that in some round about
way compared this situation to racism.

Comparing the plight od the disabled to that of black
people. Completely pointless.

This is just a long line of racist comments that she has put
into her articles.

Did she just throw in a quote that being African American to
being disabled?

Hill lost me when she compared being black to being
handicapped towards the end of the article.

I knew she was going to get race in there!

The article baffled me.

While I envy Hill's salary as a national columnist for ESPN I do not envy the harsh and bigoted remarks that accompany her writing. To receive such racist replies to my work would bother me to the point I could not write. On September 15, 2011 Hill wrote that "Why are you such a racist? I'm asked that every time I write a column about race. It baffles me". I feel equally baffled when people tell me "its always about you" meaning I am a self absorbed narcissist. The reality is it has never been about me. It is about the person who follows me and the hope they will not struggle with ingrained bias and a hostile reaction to their presence. To maintain bias exists but is not a major variable is grossly misleading. The same point was made by Hill and I would maintain is the primary reason she is labeled a racist by her detractors. Hill noted that:

To me, it's a copout when people admit that "racism is alive" or that
it still exists in some form. It reduces racism into something
abstract. It becomes a mythical idea, and this distances us from pushing
ourselves to think about where racism does exist, how it exists, and
whether its existence impacts how we think, feel and process.All of us have been influenced by race. It doesn't make us bad
people. Our country has a long, ugly history of racial division. Anyone
who assumes that the unpleasant remnants of that history aren't still
present in our culture and the way we think is being wonderfully naive.
Yes, it would be a tremendous relief if every time race played a role in
a situation, a blinking sign would flash, "HEY, EVERYBODY, THIS IS
RACISM!" But that's not the way it works, and thinking that it should work that way marginalizes the issue... I don't write about race to create a stir, but rather to promote open and honest conversations.
The quote above by Hill is spot on. Substitute the word race or racism with ableism and its meaning remains equally pointed and correct. The problem is all people know what racism is. Few people know what the word ableism refers to. And that is a problem, a significant problem, all the legislation in world cannot obliterate. What we need is a social revolution.